Leukocytoclastic [hypersensitivity] Vasculitis

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My experience with this disease began on November 6, 2008. I noticed a few red spots on my calves after taking a shower one day and dismissed them as razor burn. For one week they remained on my calves and thighs, then suddenly spread to my forearms.

I was bothered enough to make my way to an urgent care facility (sort of like an emergency room) on November 11th, figuring I had possibly come into contact with something that had caused an allergic reaction. I was hoping this was the case even though my 'spots' or 'rash' never itched.

The doctor there was less than attentive and ended up thinking it was an allergy as well. He prescribed me a six day packet of prednisolone and told me to come back if it did not clear up.

The first part of the week I continued to get more spots, although they were not raised. The fifth day of taking the medicine, I noticed that the spots were again coming up raised and they were painful. They burned.

I was on vacation for the next five days. During that time, I experienced a [i:bf3985bd4d]massive[/i:bf3985bd4d] outbreak over 95% of my body excluding the face, upper chest, and upper arms. I visited with a doctor while on vacation who said I really should wait until I arrived home to have blood work done as this seemed very serious and would definitely need a follow up appointment.

11/21/2008 (a Friday), the morning after I landed, I imediately went back to the urgent care facility and saw another doctor who was completely taken aback by the distribution and severity of my 'rash.' She ordered a lot of blood work and told me she suspected I had Idiopathic Thrombocytopenic Purpura.

They wasted no time in referring me to a hematologist, but my appointment was not until the following Tuesday and I had to return to work on Monday morning.

Throughout the day on Monday I could feel the situation getting worse. My calves, ankles, and feet were swelling and walking was painful. Tuesday morning I dragged myself to work and only ended up doing marginal work until my appointment early in the afternoon with the hematologist.

She took one look at me and referred me to a dermatologist after ordering a bunch more blood work. She had the results from urgent care already so she didn't need to repeat those tests. She said my CBC came back normal, which ruled out the Idiopathic Thrombocytopenic Purpura, and she said that she thought it was Leukocytoclastic Vasculits, but that she wanted the dermatologist to do a biopsy to be certain. She told me not to go back to work until further notice.

The dermatologist was equally enthralled by the rash and swelling and biopsied me twice, which was incredibly painful. She prescribed me a diuretic and some tylenol 3, told me to go home and put my feet up and not do anything or go anywhere for the near future.

A couple of days passed and they finally got the results of the biopsy, which confirmed the diagnosis of LV. The dermatologist prescribed a topical cream to speed the clearing of the blood. Within a week, the cream was gone, but I was still experiencing small outbreaks.

I went to the store near the end of that week and ended up having to crawl through my car to get out of the parking lot because someone had parked too close to me. In that period of time, I broke out everywhere again. My feet swelled again and I was back to bed rest for three days.

My mother took one look at me after I crawled through the car and left an urgent message with the dermatologist requesting a visit. I didn't think that was necessary as I didn't want to go anywhere or see anyone and I had a follow up with her two days from then anyhow.

The doctor called me the following day and prescribed me a 14 day cycle of Prednisone, 20 mg pills. 60 mg for the first 6 days, 40 mg for four days, 20 for three days, and 1/2 pill or 10 mg the final day.

I noticed an improvement within a day. I did not break out in any new spots and my other spots started to fade quickly while I was on the 60 and 40 mg doseage. Since I came off that dose, I have broken out repeatedly and painfully. I am now at the end of the second to last day of the 20 mg dose, so I have one more 20 mg dose and the 10 mg dose to take yet, but I do not think they will make any difference or help to stop or heal any further outbreaks.

It is now December 14th, five weeks from the onset of this thing. They tested me for everything they could think of including a viral infection, bacterial infection, and I had not taken any over the counter medication in the month preceeding this disease. Every test they ran came back negative.

I am going to call my doctor in the morning and explain to her that I am not getting better and that I am, in fact, getting worse. I am supposed to start work again on the 17th, but I am afraid I will be back at the start of this whole thing all over again without a clear outcome.

So far nobody can tell me if or when this will clear up and it is taking a huge toll on me emotionally, physically and socially.

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  • Posted

    I have similiar experience. In fact, I'm still experiencing it right now and it has been 3 months since first symptom appeared.

    Around Dec 7, 2009, I started seeing these little red spots on my right calves just like you did. I thought it was allergy too and didn't pay attention to it that much thinking it would go away in a few days. However, in the following days, the spots grew more and more... all over my legs but not over my waist. They were mostly concentrated on my lower legs.

    I went to see my primary care doctor who told me these were called \"purpura\", blood spots and he ordered a blood test on me to check my kidney. While I was waiting for the lab result, I had severe joint pain on my knees. I continued to have the spots flaring up although they do not hurt or itch... except for 1 or 2 spots. But 99% did not hurt or itch at the time.

    My first blood test result came out normal but the doctor said I need to see a rheumatologist... he said it's some kind of rheumatoid disease/order that happens mainly in children, said the spots will go away in a month of time.

    (i found out he was actually suspecting \"henoch-schonlein purpura\"wink

    I was waiting to see a rheumatologist but my ankles started to hurt really badly... it was like burning and hurting, also the spots on the ankles had grown together and formed a patch/skin lesion thing. My ankles were swollen, some of the spots were raised. I went to another general practice doctor for a 2nd opinion. She thought it was \"henoch-scholein purpura\", she believed I should see a rheumatologist too. She gave me 9 days of predisone. 60mg for first 3 days, 40mg for next 3 days, 20mg for final 3 days.

    I took the drug but it didn't seem to help much. I kinda felt that the pain wasn't going to last too long anyways... it lasted about 3-4 days... just like the joint pain.

    Then I started to see the rheumatologist. This man is old... he's 76 years old! He first did a full body check on me, didn't find anything. He ordered several blood tests on me, checking on serious blood disease, connective tissue disease, etc. All came back normal. Urine tests were normal too. He said it's likely to be \"hypersensitiy vasculitis\" rather than HSP because HSP only happens to children... (although I don't agree, I have read so much about it happening to adults too, it's rare but it still happens to them)

    By then actually I wasn't feeling pain anymore. I only had the purpura on my legs... they would fade (not completely, they were fading) but new ones would come on again. So it had actually never stopped.

    Anyways, he did a skin biopsy on me. He collected the tissues of a relatively new purpura on my leg and sent to the lab. That wound took me more than a month to heal!! I had to put silvadene on it to keep from scabbing, cleaned it twice a day... had to remove the waste products from the wound everyday by wiping and it hurt... it leaves a bullet sized scar.

    Meanwhile, I still had the spots but they seemed to be less... sometimes I still got more, but sometimes less... I had smaller breakouts.

    The skin biopsy result came back \"non-specific\".. it doesn't confirm it is vasculitis!! But my doctor thinks it's \"hypersensitiy vasculitis\" and he was going to keep me predisone. But he saw that my spots seemed to be clearing up, he said \"hypersensitiy vasculitis should be self-limiting. it will be ups and downs before it quits... if you don't really need to take any drugs then don't\". At the time, I appeared to be getting much better, I only had small breakouts and I had no pain anymore. So he withheld his decision of giving me predisone.

    Since then I continued to have new breakouts, sometimes I got more spots than other times... they're mostly concentrated on my feet, lower calves, then scattered through out my thighs... but never on my body. I have had them appearing on my hands and arms maybe 2 cycles

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    • Posted

      Hello Gest!!!  I know you wrote this over a year ago,..so it can't have been me writing it..BUT..it sounds exactly like what I hav e been experiencing , min us the old doctor.. hahaha!!!

      I am on a low dose prednisone , because I am afraid of the side effects. As it is, I have started with i nsominia 2 weeks after starting it! (But, my daytime energy level is better)

      I am in pain 24/7 from  sores!!!!  I have the worst clusters on my Right Calf and my Right Burrocks!!!  

      I have to deal with sitting and drivi ng..which are horrendous!! 

      I have pain medications because I deal with Chronic Shingles and Herpes Sim plex, alon g with Fibromyalgia,..but...when the sores BURN isessively, the on ly thing that helps is to cover them with pressure..and soaking them..(which helps remove the exudate / weird scabbing.)  Some have become like pressure sores/ulcers, because they are on  my butt, and have been there and open for many months!!!

      Help..somebody!!!!!!    :*(

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  • Posted

    Hello,

    I feel like I am the only person in the world who has Hypersensitivity Vasculitis, and while I don't wish this on anybody else, it is good to hear other people's experiences, so thank you for sharing.

    In late January, 2010, I experienced a mild rash on my lower legs, which I assumed was a heat rash. It did not go away, and then my ankles became very sore, which I assumed was from working out at the gym too much. Then I noticed the rash was spreading upwards on my legs, and my ankles were sore AND swollen, and it was becoming difficult to walk comfortably. This was on a weekend and we had tickets to see Elton John and Billy Joel, and I was not going to let anything stop me from going! So of course I hobbled along that evening (but had a great time). First thing Monday morning I called my primary physician, and even sent him a photo of my leg. He wanted me to come in and see him on Tuesday, and when I came in to see him, he then consulted a Rheumatologist, who came over to see me right away and basically took over my case. The Rheumatologist sent me to see a Dermatologist, who took a biopsy, and it came back as Hypersensitivity Vasculitis. My Rheumatologist thought I had Rheumatoid Arthritis and ran all kinds of tests and blood work, and many test results came back abnormal. I was given a cream (Clobetasol Propionate) to put on the spots, and also immediately put on Prednisone (40mg), which is truly a miracle drug. It took about a week for the spots to begin clearing up and the swelling/soreness to go away. I know that I forgot to take the Prednisone one morning and by that afternoon the rash came back in full force! It was scarey. My Rheumatologoist sent me to get a CT scan, and later a PET scan. By this time, she decided I did not have Rheumatoid Arthritis and she was thinking that perhaps in addition to the HV I had Lymphoma due to enlarged lymph nodes in my neck and a few other issues that were showing up. But the enlarged lymph nodes were not THAT enlarged, and other indications were not very strong. A biopsy was considered to be more risky than beneficial. If there was Lymphoma, it was very low grade and the drugs I was taking are cancer treating drugs anyway. Others have mentioned how long it took their biopsy to heal -- the same thing for me! It took a very, very long time for that tiny little incision to heal and it left a scar. Eventually, my blood work results improved, including my liver, and right now all test results are normal, thankfully. I am currently taking Methotrexate while the doctor is hoping to wean me off Prednisone. My Prednisone dosage has been lowered a couple of times and each time it takes me a week or so to get used to the lower dosage. I also take Vitamin D and Calcium now. There are times when my ankles feel a bit wobbly, and I occasionally drop a cup from my hand, so I have to be more careful in that regard. I am told I have to live with this for the rest of my life, but the prognosis is quite good as long as none of my organs are affected. Because I am taking Methotrexate, I need to stay out of the sun. Also because the liver is so easily affected, I am told not to drink more than 1 glass of wine a week.

    I would love to hear from somebody who has lived with this for a long period of time to see how they are doing. This is a rare disease, and I have not met anybody who has had it.

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    • Posted

      Make sure you take folic acid while you are taking the methotrexate. It will prevent damage to your kidneys and is essential with that medication. It floors me how many doctors neglect to tell their patients to take it. Hope you are doing well.
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    • Posted

      Hello gsaad,

       I have continuous chronic urticarial vasculitis.

      My first attack was in 2005 but it did not become continuous chronic UV

      until 2012. I am on a high dose of prednisolne.

      After researching UV treatment on the internet I found many stories

      from fellow chronic UV suffers and the treatments they were using.

      60 mg of prednisone per day was very common with some patients 

      prescribed up to 100 mg per day.

      The dosage my doctor & I developed that works for me is 80 to 100 mg

      pd for the first 8 days and then follow the Dermatology Associates of

      Wisconsin, S.C. 12 day prednisone taper to zero dosage. 

      After this I try to go as long as possible until the returned UV rash 

      becomes unbearably itchy and then I commence 

      the prednisone treatment as previously described above.

      During this 6 week period ( approximately wink I experience the effects

      of the prednisone which I tolerate because it’s better 

      than the nightmarish itching of the Chronic UV.

      After a bad reaction to Plaquenil which didn’t have any effect

      on my CCUV I am now looking at other drugs such as 

      Methotrexate

      Cyclosporin

      Dapsone

      Omalizumab ..Xolair

      I would be very interested to hear of your experience & opinion

      with any alternatves to Predisolne.

      Cheers,

      Paul

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  • Posted

    Heya,

    I've been suffering with Bulleous Vasculitis/Cellulistis and lesions now for just under 8 months. I remember it was a Sunday night before I was about to go to bed for work the next day when I noticed these little red dots in my ankles, they looked like little acne spots. They didn't hurt or anything and they weren't itching, so I didn't think too much of them and that they'd clear up by morning. I went to bed and woke up the next day and they'd all started to kind of merge and leak this orange fluid (sorry!) I made an emergency appointment at my GP's. I saw her in the evening and she straight away diagnosed me with Shingles, telling me that it was a reactivation of the Chickenpox. She gave me some cream to apply in the shower which I duly did and nothing really changed. Within less then 48 hours, it'd spread to my left ankle and by now I had red blotches all over both my ankles. It was quite painful to try and even get a pair of trainers on too and was pretty hard to walk by this point. I ended up going back to the GP's and she gave me more cream (she was about as much use an ashtray on a motorbike) and sent me on my way.

    By now it was the weekend and my friends were round, and my best mates wifes mum who is a nurse saw some pictures I sent to her and she told me to get down the hospital. My feet had swollen so much I had no definiton of an ankle/foot line. My mates took me down to A&E where the doctors there were thrown as to what it was too and they put me on Flucloxacillin and Amoxicillin. They were asking me all sorts of questions, like had I been abroad, allergic to anything and have I been bitten by anything. Nothing of the sort.

    2 days past and I was in pain again, my GP was called out and straight away he called for an ambulance to take me to hospital. I was admitted for observation overnight where they pumped me some more drugs. I wasn't able to really walk at this point either, so that was frustrating. I had to return to the hospital the following down for blood tests and because they wanted to put me on medicine that went through a capula, hence I couldn't do it at home. I was admitted when I got to the hospital there and then. I was kept in the hospital for over a week and they took blood, checked urine, xrays of my chest, pumped me full of flucloxacillin and so on. This went on for a week until they finally got me in to see the dermatologist who straight away diagnosed me with Bulleous Vasculitis, Cellulitis and 2x secondary infections. They performed a biopsy too, to see if they could see what caused it as to this day it's unknown. They switched me over to Predisolone 80ml along with Omazrepole (sp) and calcium tablets. They also started me on potassium soaks every day to dry out the skin to help with healing. This has been going on every since around the end of October up until this day. The vasculitis has I believe gone, but just after Christmas I was noticed a deep hole in my foot that was filled in and all yellow. It turned out I was now infected in the hole which spread to the area where the skin was taken for the biopsy. After more meds and increased dosage that healed up and yet again a few weeks later it got infected with bacteria. Thankfully that cleared up and it's just VERY VERY slowly healing. I've had the 2 holes in my left ankle now for around 5 months and I have a rather viscious looking one on my right ankle too, where it all started. For the most part, I'm able to still move around, albeit not for long periods of time and stand, again for only short periods of time. I get immense pain in my right foot along the side and just across the joint of my leg foot along the nerves which make me have to stop and just rest until it goes away. It's like a sharp digging pain.

    The dermatoligist has put me on new medicine too recently, Mycophenolate 1g daily. On top of the predisolone as well.

    I can understand the frustration it's caused others, it's impacted me in everything I do.

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    • Posted

      I'm new to this Patient Forum. When I found it I immediately started reading all the stories as I have the same symptoms you guys are having almost a year now. I thought it was mainly skin problems "Atopic Dermatitis" which is the ballpark for many skin related symptoms. I've had numerous breakouts of Eczema but usually clears up in about 2 weeks with corticosteroids "Prednisone" and creams and Benedryl. This time it is NOT clearing up. Lots of Doctors, medications and recommendations. After reading everything I could find on the Internet, I came across an old medicine that my grandmother used. Diaper Rash Cream. The only ingredient is 1% ZINC OXIDE. I tried it and it seems to be working, very slowly. Started reading again and found a related website which also sold "ZINC OXIDE 20%". Further reading indicated that people with all kinds of skin problems reveal a ZINC Defiency. ZINC is especially needed by the body in order for other components to work properly which include arthritis, osteoarthritis, multiple skin issues, joint problems, kidney & liver, infections, slow healing and more. Doctors say there is actually no cure for "Atopic Dermatitis" only proper management Most needed by the body is ZINC, COPPER, MAGENESE, Especially VITAMIN D (3&6) OMEGA FATTY ACIDS and B VITAMINS. ZINC is needed to help the body rid the TOXINS

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    • Posted

      Hi seems like my sister is going thru the same thing. They recently put her or mycophenolate. Did it work on you. ??
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  • Posted

    Feb., 2010, I woke up with bright red blotches over both my lower legs.

    Short story - dermatologiest did biopsy and says I have skin vasculitis. Have also seen reumatologist (sp?) and he confirms. Am advised there is nothing to take or do to stop the red lower leg flare-ups. Since Feb. I constantly have some, some more, some less, on both lower legs and feet. Am told cause is unknown. It's frustrating but nothing can take it away.

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  • Posted

    Hello Nana3,

    I can't believe your doctor is telling you that nothing can be done! The first thing my husband's doctor did was to put him on Prednisone (a miracle drug). We posted here earlier, and I have to say our doctors here have been great. Prednisone is not a drug that should be taken forever, so the doctors are slowly weaning my husband off of it, but at the same time he has been increasing the drug Methotrexate. Please keep trying to work with your doctor, or get a referral to another doctor. There is a Vasculitis Foundation in the U.S. that has lots of good information, so you can try that as well. Vasculitis is a disease that must be managed on a lifelong basis, with medication, proper diet and just taking good care.

    Good luck!

    Kris & George

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  • Posted

    Poor munchkins! It's been quite a number of years since anyone has contributed to this discussion, hope you're all feeling much better.

    If you are still going through the motions of leukocytoclastic vasculitis I would suggest you go down to your nearest fruit market, preferably organic if you are able to, and purchase 10kg of any citrus fruit of your choice, mandarins are the best. All you need to do now is eat all of them aiming for at least one and a half kilos a day. Make this part of your ritual for as long as you need to. I did this for about 4 weeks. The anti inflammatory effects of the vitamin c contained in the mandarins was amazing, even my rheumatologist who had no idea I had stopped taking the plaquenil he had prescribed to me commented on my incredible recovery.

    This is exactly what I did at age fifteen while I was trying desperately to get over the vasculitis I had suffered with since I was 10 years old. I also got to the point where I would avoid walking so that I'd be able to fit in to my school shoes the next day. It sucks.

    I'm 24 years old now and all I have to remember of my vasculitis is a single photograph of me at the beach where there are red and purple splotches all over my feet. I barely even have any scars to show for it.

    All the best smile

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    • Posted

      Hi Derya

      Good to hear someone with a positive at the end of the story, rather than another story with no protenial cure. I would tho like to ask you some questions. How long did you continue to take so much vitamin C? Or are you still taking so much now? Does it have to be organic fruit or can you take vitamin C tablets? Your responce would be greatly appreciated.

      Many Thanks Lee

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    • Posted

      Hi derya.

      It's very nice to listen ur experience. It's like a like at the end of a tunnel...I've started ur treatment of 1 n a half kg organic oranges ...but i can't eat them so i make smoothie of them n drinking about 3 big size glasses of them...n i'm sure i came across with ur experience is a remedy sent to me from my Allah!...i'll definitely beat this desease with ur treatment inshaAllah!..

      Thank u soooo much for sharing it!...

      God bless u!..

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  • Posted

    i have the same problems as mentioned above..some doctor say its purpura some say its Hypersensitivity Vasculitis, tried different medicine vitamins like vitamin b+ tablets.. and also noe they gibin me some steriods cream mild ones... i know steriods is not good. so i dnt put it often unless the rash is realy severe.... its been nearly a year now... its just comes agen and agen.. esp i get ore sensitive to AC and all my classes has AC and my uniform is a short black skirt.. so its really hard for me to hide the rash too... its getting more and more depresiing now.. is there really no cure for it?? sad
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  • Posted

    Hi everyone, my rheumatologist at UCLA told me there is no cure, but, guess what, I have MPA and mine is in remission. Yes. I feel great, I have bad scars on my feet, ankles and lower legs where the lesions were. But it's a lot different than having the deep burning oozing (sorry) open sores. I went through a lot to get to this point, but here I am nonetheless. So, how did I get here? Well, here's my timeline. First of all the lesions did not spread they were only limited to my feet, ankles and lower legs. Where the scars are now, the skin is still tender and since the skin was so traumatized, sometimes it tends to be itchy or get something like a mild psoriasis. I have cream for that which works very well called Fluocinonide Gel .05%. Anyway, generally I have healed up quite well. Back when my first symptoms showed up it was around Oct. 2011. It started with red dots, swollen ankles and feet, swollen calves a bit. Then lesions on my left and right ankles showed up and spread a little, it burned like crazy. I went to an urgent care, they diagnosed it as a spider bite. But how could a spider bite me on both ankles. They gave me antibiotics. So one day my brother took me to my neighborhood ER, they performed a biopsy right there in the ER. They admitted me into the hospital for two days while they ran tests. They sent me to dermatology, determined it

    was Polyarteritis Nodosa. Dermatology sent me to Rheumatology. They started me on prednisone, 60 mg. with directions to taper. Then from there I started going to a rheumatologist near my work, he really did not do anything except keep me on the prednisone, he gave a cream, Clobetisol, something like that, told me to wrap my feet up in Saran wrap at night. I was in so much pain. It was awful. Walking became more and more difficult. I had to wear bandages all the time. I finally went to UCLA in summer 2012. I made an appointment with a rheumatologist there who thoroughly evaluated me, diagnosed me with Microscopic

    Polyangiitis. He wondered why I waited so long to come to him. He offered me some choices of treatment and I decided on Rituxan, a sort of chemo therapy, a mild chemo. I began treatment in August 2012. It was my first round of Rituxan at the oncology center. Four treatments all together, once per week, the entire month of August 2012. By this time I was on disability. I stayed out on disability for 12 weeks. I began improving about a month after the treatment ended but it was very slow going. I went back to work that November. I was still pretty sick but moving around better. They even gave me a temporary disabled placard. It sure helped me a lot. Well, I kept improving, my skin started healing, the swelling started going down. I recently had one more round of treatment with the Rituxan this last June 2013. I'm really feeling so much better now. The swelling is down. As I said I have sort of terrible scars, but they are SCARS, not open sores. I feel better than I have in months. I hope so much that the disease symptoms do not return. I feel like it is not going to return. I feel so "past" all that now. But you have to be diligent. My daughter thinks I should start a gluten free diet - something along those lines. Even though they say diet has nothing to do with it, you never know, maybe wheat free wouldn't be a bad thing to try. But I don't know what I would have done without the Rituxan. I am now off the prednisone. I tapered down and went completely off about three months ago. Everything is going well at home and work. I hope other people will read this and know that you can heal from Vasculitis. Mine is in remission big time. I'm living my normal life now. Good luck to everyone.

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